Johns Hopkins infectious disease specialists who have
spent more than two decades leading efforts to combat HIV
and AIDS worldwide are warning that limited international
relief supplies of antiretroviral therapies currently being
distributed in Africa, Asia and the Caribbean will not get
to those who can least afford to pay for them.
In an article appearing in the American Journal of
Public Health in July, infectious disease specialist
Jonathan Zenilman, a professor at the School of Medicine,
reports that poorer people have been left out in the past
due to insufficient local planning, and that donors and
developing countries should learn from these mistakes as
the number of people requiring therapy continues to
"Local health officials are faced with the unenviable
and difficult task of having to decide who will get therapy
and live, and who will have to do without and possibly
die," he says. "But this dilemma is unavoidable because
supply will fall far short of demand, despite the generous
nature and growing scope of aid efforts."
While President Bush's 2003 Emergency Plan for AIDS
Relief is spending more than $600 million on antiretroviral
therapies for 2 million people, demand in the developing
world is even greater and steadily growing, with at least
6.5 million people in need of drug therapy and only 15
percent receiving any. And, Zenilman notes, treatment for
HIV is a lifelong need for infected people.
"Even if the president's plan was successful and [was]
included with the Global Fund to Fight AIDS, Tuberculosis
and Malaria, which calls for providing treatment to 3
million people by 2005, these efforts would only reach half
of those in need," says Zenilman, senior author of the
"Though more people in developing countries are
receiving therapy, growing from 400,000 in June 2004 to
700,000 in December 2004, it still amounts to only 4
percent of infected people in India, 5 percent in Ethiopia
and 7 percent in South Africa," he writes.
Internationally, Zenilman has led clinical studies to
determine how best to prevent the spread of sexually
transmitted diseases in the Americas, Africa, Asia and, in
particular, the Middle East.
In the new article, the Johns Hopkins researchers
argue that the history of medicine is packed with examples
of immediate demand for new therapies outstripping supply.
They also point out that rationing of supplies was
necessary in all cases but that public distrust and outrage
arose when patient selection methods conflicted with local
Led by Johns Hopkins medical historian Laura McGough,
the team reviewed four major developments in medicine that
shared the issues confronting distribution of
The first two pivotal events were advances to treat if
not cure then fatal diseases: the discovery of insulin for
diabetes in 1922 and the mass distribution of the
antibiotic penicillin in 1943.
In the case of diabetes, insulin's availability turned
a once-fatal disease into a chronic, manageable, lifelong
one, like antiretroviral therapy has done for HIV. However,
the researchers point out that what ensued was a mess; in a
completely haphazard fashion, medication went to family
members of prominent politicians, private clinics or
friends of the physician discoverers, who were caught off
guard and almost instantly flooded with requests from the
More controversial was the penicillin case, in which
two government-appointed committees, one military and the
other civilian, decided who received medications. While the
civilian committee allocated drugs to the most seriously
ill, its decisions were viewed as cold-hearted and distant
in letters to committee members and in press headlines.
Further inflaming public sentiments was the military's
allocation of supplies to soldiers with
non-life-threatening sexually transmitted diseases. Eager
to return soldiers to active duty, wartime needs outweighed
civilian concerns, but this did not sway public opinion
that the military was wasting its share of medication.
"While the lack of a plan is the worst-case scenario,
even a plan with no public input can backfire if it fails
to win local support," says McGough, a research fellow at
Hopkins' Institute of the History of Medicine. "It is as
important to make sure that the decision-making body is
politically legitimate and accountable to the public as it
is to agree on the criteria for patient selection to begin
The other two precedents are the introduction of
hemodialysis for end-stage kidney disease in the 1960s and
allocation of livers for transplant in the 1980s and early
Like HIV infection, these conditions require
expensive, lifelong follow-up. Indeed, people who benefit
most from hemodialysis are the ones who strictly follow
their physician's advice and their dialysis schedule.
Initially, however, the determination of who would most
likely adhere to hemodialysis therapy used "social worth"
criteria that favored members of the middle class, from
whose ranks came the majority of patient selection
committee members. Married people with high salaries were
favored over singles, working men over stay-at-home moms,
churchgoers over nonbelievers and parents over children.
The public outcry led Life magazine to feature on its cover
a picture of a child rejected for treatment, prompting the
committee to attempt to change its criteria toward a
With liver transplants, patient selection was plagued
by different interpretations of who medically benefited
most from a transplant and by a scoring system that favored
patients most likely to survive their surgery over those
most likely to die. In this system, the patients getting a
liver transplant were often the most likely to benefit from
it but not always in greatest medical need of surgery. Due
to public pressure, the allocation system was revised to
put first the most urgent cases, not those who stood the
chance of living the longest.
Similarly, previous studies have recommended that the
most severely affected AIDS patients be first in line for
According to McGough, "Medical criteria are never
completely neutral, and they have to be balanced against
the society being served, so the patient selection criteria
need to be developed locally and to incorporate local
values about priorities, adherence and such issues as
whether or not children should be treated first.
"If current global efforts to prevent the spread of
HIV/AIDS are to work in the long term, they must avoid
public suspicions of being unfair, and they must build
public trust for the future," she says.
"HIV-positive people in each country affected must be
involved in deciding how limited therapies are rationed,
and these decisions cannot be made for them by
self-appointed experts. We do not want this opportunity to
become another case where only a few privileged people
receive therapy. What international authorities can do is
help these countries plan for rationing, so that the
medical and ethical mistakes of the past are not
Funding for this research came from the Association of
Teachers of Preventive Medicine Fellowship at Johns Hopkins
and the Centers for Disease Control and Prevention. Other
Johns Hopkins scientists who participated in this study
were Steven Reynolds and Thomas C. Quinn.